{"id":1544,"date":"2020-02-21T14:31:26","date_gmt":"2020-02-21T13:31:26","guid":{"rendered":"http:\/\/klubcf.sk\/?p=1544"},"modified":"2021-02-23T14:01:14","modified_gmt":"2021-02-23T13:01:14","slug":"pacienti-s-cystickou-fibrozou-na-slovensku-cakaju-na-schvalenie-pricinnej-modernej-liecby-na-svoju-diagnozu","status":"publish","type":"post","link":"https:\/\/klubcf.sk\/index.php\/2020\/02\/21\/pacienti-s-cystickou-fibrozou-na-slovensku-cakaju-na-schvalenie-pricinnej-modernej-liecby-na-svoju-diagnozu\/","title":{"rendered":"Pacienti s cystickou fibr\u00f3zou na Slovensku \u010dakaj\u00fa na schv\u00e1lenie pr\u00ed\u010dinnej, modernej lie\u010dby na svoju diagn\u00f3zu."},"content":{"rendered":"<p><a href=\"https:\/\/www.teraz.sk\/zdravie\/prelom-v-liecbe-cystickej-fibrozy\/447633-clanok.html\">TERAZ.SK tla\u010dov\u00e1 spr\u00e1va<\/a><\/p>\n<p><b>Stanovisko organiz\u00e1ci\u00ed rodi\u010dov a pacientov Cystickej Fibr\u00f3zy k n\u00e1vrhu na zaradenie pr\u00ed\u010dinn\u00e9ho lieku do zoznamu kategorizovan\u00fdch liekov a \u00faradn\u00e9 ur\u010denie ceny lieku<\/b><br \/>\n<i>Cystick\u00e1 fibr\u00f3za je zriedkav\u00e9, genetick\u00e9, nevylie\u010dite\u013en\u00e9 ochorenie. Jedn\u00e1 sa o progres\u00edvne ochorenie a multi-org\u00e1nov\u00e9 ochorenie. Postihuje devasta\u010dn\u00fdm sp\u00f4sobom p\u013e\u00faca, pankreas, pe\u010de\u0148, tr\u00e1viacu s\u00fastavu, pridru\u017e\u00ed sa diabetes, osteopor\u00f3za, neplodnos\u0165, nosov\u00e9 polypy. Aktu\u00e1lna lie\u010dba cystickej fibr\u00f3zy je len symptomatick\u00e1, na spomalenie progresie ochorenia. Z\u00e1rove\u0148 je lie\u010debn\u00fd a \u017eivotn\u00fd re\u017eim mimoriadne n\u00e1ro\u010dn\u00fd \u010dasovo, fyzicky, psychicky, ekonomicky pre rodiny pacientov, ale rovnako n\u00e1ro\u010dn\u00fd na poskytovan\u00fa zdravotn\u00fa starostlivos\u0165. Napriek ve\u013ek\u00e9mu \u00fasiliu o z\u00e1chranu zo strany komunity a na\u0161ich lek\u00e1rov, str\u00e1came pacientov hrozn\u00fdm sp\u00f4sobom vo ve\u013emi mladom veku, \u010dasto pred dosiahnut\u00edm dospelosti. Cystick\u00e1 fibr\u00f3za nepostihuje intelekt a pacienti v na\u0161ej komunite vedia dosiahnu\u0165 napriek diagn\u00f3ze a v\u010f aka mimoriadnej snahe a sebazapreniu a okolnostiam \u00fa\u017easn\u00e9 v\u00fdsledky v r\u00f4znych oblastiach pre pr\u00ednos a zaradenie sa do spolo\u010dnosti.<\/i><\/p>\n<p>Po mnoh\u00fdch desa\u0165ro\u010diach v\u00fdskumu a v\u00fdvoja, od 50. rokov minul\u00e9ho storo\u010dia a\u017e po pochopenie podstaty choroby na genetickej a bunkovej \u00farovni, s\u00fa od roku 2012 uv\u00e1dzan\u00e9 na trhy vo svete prelomov\u00e9 lieky, korektory a modul\u00e1tory, na lie\u010dbu z\u00e1kladnej pr\u00ed\u010diny cystickej fibr\u00f3zy, zlyh\u00e1vania funkcie prote\u00ednu CFTR. T\u00e1to lie\u010dba je prevratn\u00e1, prv\u00e1 a nateraz jedin\u00e1 pr\u00ed\u010dinn\u00e1, nie symptomatick\u00e1.<\/p>\n<p>V komunit\u00e1ch pacientov, ktor\u00ed maj\u00fa pr\u00edstup k tejto lie\u010dbe, po celom svete, vid\u00edme \u00fa\u017easn\u00e9 re\u00e1lne zlep\u0161enia kvality \u017eivota pacientov (v\u00fdrazn\u00e9 pred\u013a\u017eenie d\u013a\u017eky \u017eivota, v\u00fdrazne menej z\u00e1palov, menej u\u017e\u00edvania or\u00e1lnych a IV ATB, menej hospitaliz\u00e1ci\u00ed, n\u00e1rast funk\u010dn\u00fdch ukazovate\u013eov p\u013e\u00fac, oddialenie alebo nepotrebn\u00e1 transplant\u00e1cia p\u013e\u00fac, zlep\u0161enie prospievania, u\u017e\u00edvanie men\u0161\u00edch d\u00e1vok enz\u00fdmov, pokles hladiny cukru, obmedzenie u\u017e\u00edvania inzul\u00ednu&#8230;).<\/p>\n<p>Dostupnos\u0165 korektorov a modul\u00e1torov v jednotliv\u00fdch krajin\u00e1ch vo svete a v Eur\u00f3pe r\u00fdchlo prib\u00fada doslova z mesiaca na mesiac.<\/p>\n<p>Za komunitu, pacientov, rodi\u010dov a rodiny, zdravotn\u00fdch pracovn\u00edkov chceme poprosi\u0165 a po\u017eiada\u0165 o dosiahnutie dohody o cene a zaradenie tohto prevratn\u00e9ho lieku do syst\u00e9mu \u00fahrad; zaradenie pr\u00ed\u010dinn\u00e9ho lieku do kategoriz\u00e1cie a syst\u00e9mu \u00fahrad plne podporujeme.<\/p>\n<p>Nikto nem\u00f4\u017ee za osud, ktor\u00fd dostali na\u0161i pacienti a ich rodiny do vienka, ke\u010f doteraz lie\u010dba pr\u00ed\u010diny pre t\u00fato diagn\u00f3zu neexistovala. Z\u00e1rove\u0148 sme ale presved\u010den\u00ed, \u017ee ak v\u00fdvoj dospel do \u0161t\u00e1dia, kedy existuje prv\u00fdkr\u00e1t v hist\u00f3rii \u00fa\u010dinn\u00e1, pr\u00ed\u010dinn\u00e1 lie\u010dba, je na\u0161ou povinnos\u0165ou ako modernej spolo\u010dnosti v r\u00e1mci Eur\u00f3py, v spolo\u010dnom \u00fasil\u00ed, prinies\u0165 rovnocenn\u00fa lie\u010dbu v r\u00e1mci zdravotn\u00e9ho syst\u00e9mu aj pre pacientov na Slovensku.<\/p>\n<p>Po mnoh\u00fdch rokoch a gener\u00e1ci\u00e1ch trpiacich pacientov, ktor\u00ed nemohli dosta\u0165 \u0161ancu dospie\u0165 a \u017ei\u0165; prv\u00fdkr\u00e1t existuje n\u00e1dej, aby cystick\u00e1 fibr\u00f3za nebola rozsudkom smrti, ale mana\u017eovate\u013en\u00fdm ochoren\u00edm v\u010faka existuj\u00facej lie\u010dbe.<\/p>\n<p>\u010cestne prehlasujeme, \u017ee v\u0161etky aktivity na podporu pr\u00ed\u010dinnej lie\u010dby pre pacientov s CF na Slovensku organizovali a zastre\u0161ovali v\u00fdlu\u010dne a samostatne organiz\u00e1cie rodi\u010dov a pacientov s Cystickou Fibr\u00f3zou; Slovensk\u00e1 Asoci\u00e1cia Cystickej Fibr\u00f3zy, Klub Cystickej Fibr\u00f3zy a zdru\u017eenie Priatelia slan\u00fdch det\u00ed.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-1545\" src=\"http:\/\/klubcf.sk\/wp-content\/uploads\/2020\/02\/FOTKA-KAMPAN-01.jpg\" alt=\"\" width=\"1024\" height=\"768\" srcset=\"https:\/\/klubcf.sk\/wp-content\/uploads\/2020\/02\/FOTKA-KAMPAN-01.jpg 1024w, https:\/\/klubcf.sk\/wp-content\/uploads\/2020\/02\/FOTKA-KAMPAN-01-300x225.jpg 300w, https:\/\/klubcf.sk\/wp-content\/uploads\/2020\/02\/FOTKA-KAMPAN-01-768x576.jpg 768w, https:\/\/klubcf.sk\/wp-content\/uploads\/2020\/02\/FOTKA-KAMPAN-01-570x428.jpg 570w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>TERAZ.SK tla\u010dov\u00e1 spr\u00e1va Stanovisko organiz\u00e1ci\u00ed rodi\u010dov a pacientov Cystickej Fibr\u00f3zy k n\u00e1vrhu na zaradenie pr\u00ed\u010dinn\u00e9ho lieku do zoznamu kategorizovan\u00fdch liekov a \u00faradn\u00e9 ur\u010denie ceny lieku Cystick\u00e1 fibr\u00f3za je zriedkav\u00e9, genetick\u00e9, nevylie\u010dite\u013en\u00e9 ochorenie. Jedn\u00e1 sa o progres\u00edvne ochorenie a multi-org\u00e1nov\u00e9 ochorenie. Postihuje devasta\u010dn\u00fdm sp\u00f4sobom p\u013e\u00faca, pankreas, pe\u010de\u0148, tr\u00e1viacu s\u00fastavu, pridru\u017e\u00ed sa diabetes, osteopor\u00f3za, neplodnos\u0165, nosov\u00e9 polypy. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1452,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"footnotes":""},"categories":[10],"tags":[],"class_list":["post-1544","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-vyskum-a-vyvoj"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Pacienti s cystickou fibr\u00f3zou na Slovensku \u010dakaj\u00fa na schv\u00e1lenie pr\u00ed\u010dinnej, modernej lie\u010dby na svoju diagn\u00f3zu. - klubcf.sk<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/klubcf.sk\/index.php\/2020\/02\/21\/pacienti-s-cystickou-fibrozou-na-slovensku-cakaju-na-schvalenie-pricinnej-modernej-liecby-na-svoju-diagnozu\/\" \/>\n<meta property=\"og:locale\" content=\"sk_SK\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Pacienti s cystickou fibr\u00f3zou na Slovensku \u010dakaj\u00fa na schv\u00e1lenie pr\u00ed\u010dinnej, modernej lie\u010dby na svoju diagn\u00f3zu. - klubcf.sk\" \/>\n<meta property=\"og:description\" content=\"TERAZ.SK tla\u010dov\u00e1 spr\u00e1va Stanovisko organiz\u00e1ci\u00ed rodi\u010dov a pacientov Cystickej Fibr\u00f3zy k n\u00e1vrhu na zaradenie pr\u00ed\u010dinn\u00e9ho lieku do zoznamu kategorizovan\u00fdch liekov a \u00faradn\u00e9 ur\u010denie ceny lieku Cystick\u00e1 fibr\u00f3za je zriedkav\u00e9, genetick\u00e9, nevylie\u010dite\u013en\u00e9 ochorenie. Jedn\u00e1 sa o progres\u00edvne ochorenie a multi-org\u00e1nov\u00e9 ochorenie. Postihuje devasta\u010dn\u00fdm sp\u00f4sobom p\u013e\u00faca, pankreas, pe\u010de\u0148, tr\u00e1viacu s\u00fastavu, pridru\u017e\u00ed sa diabetes, osteopor\u00f3za, neplodnos\u0165, nosov\u00e9 polypy. 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Jedn\u00e1 sa o progres\u00edvne ochorenie a multi-org\u00e1nov\u00e9 ochorenie. Postihuje devasta\u010dn\u00fdm sp\u00f4sobom p\u013e\u00faca, pankreas, pe\u010de\u0148, tr\u00e1viacu s\u00fastavu, pridru\u017e\u00ed sa diabetes, osteopor\u00f3za, neplodnos\u0165, nosov\u00e9 polypy. 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